The children’s hospice in Astley Village, near Chorley, has hit out at “patchy” NHS provision, saying their nurses are providing out-of-hours care out of goodwill, and children’s hospices are plugging the Government gaps, “paid for by bake sales and sponsored walks”.
The findings are part of a needs assessment, carried out for the hospice by independent researchers. The 120-page report found that spending on provision differed hugely within the 20 North West CCGs contacted. Some had robust services in place, and others nothing.
Researchers found gaps in specialist palliative knowledge and training, emotional wellbeing support, cultural link workers and transition services when young people reach the 26-year cut off point.
End of life 24/7 care is particularly limited, with Derian House Children’s Hospice regularly stepping in to provide this, the report found.
The report states that in Lancashire CCGs - NHS bodies responsible for the planning and commissioning of health care services for their local area - were found not to provide:
- A rapid transfer process for children and young people with life-limiting conditions to allow urgent transfer from the ICU to home, or to a hospice
• Transition services
• A level 4 paediatric palliative consultant
• Voluntary sector children’s palliative care services
• Bereavement care before and after a child or young person has died.
However, the Lancashire and South Cumbria Integrated Care System, said that a new palliative care strategy for Lancashire is being developed, specifically looking at ways to enhance to care offer for children and young people and their families in the local area. They also claim that the NHS locally works well with Derian House to attract and ring-fence funding.
“While the findings of our research are stark, they are not shocking to us because we’ve been filling the gaps in children’s palliative and end of life care for a long time,” said David Robinson, Chief Executive of Derian House.
“It costs £5 million to run our services every year and yet currently only 12 per cent of this comes from government funding. The care of seriously ill children in our community is being paid for by bake sales and sponsored walks, which is simply not right.
“We have great working relationships with some CCGs in the area and are working hard on our partnerships with others and the wider health network.
“Our aim is to ensure that no child with a life-threatening or life-limited condition is missed and that every family gets the help they need.
“The findings of this research will mean we can set out our aims as a charity using the words of the people who matter most - our families.”
A spokesperson on behalf of the Lancashire and South Cumbria Integrated Care System, said: “All CCGs across Lancashire and South Cumbria have worked alongside local charities, including Derian House, for a number of years, supporting activity through methods such as grant funding.
“More recently, the Lancashire and South Cumbria Integrated Care System (ICS), a partnership of local health and care providers, have developed an ICS palliative care strategy for Lancashire which includes looking at ways to enhance to care offer for children and young people and their families in the local area.
“This has seen partnership working across Lancashire and South Cumbria CCGs, wider NHS partners and Derian House and has enabled the ringfencing of funding through national funding streams and local investment to provide commissioned children and young people palliative care services; a first for Lancashire and South Cumbria and a huge investment which will enable specialist care to be provided through practitioners at Derian House and other local services.
“We will continue to work with Derian House and local partners to develop these services to provide the best possible care for children and young people and their families.”
According to the report, there are more children and young people living with a life-limiting condition in the North West compared to the national average of England as a whole.
There are currently 72.5 per 10,000 population and this figure is rising.
The survey, which also asked families about their experience at Derian House, found that 97 per cent of participants would recommend Derian House to others needing similar care and support.
Five-year-old Riziah Moazzeny from Chorley was born with a condition called heterotaxy syndrome, where some of the organs, including the heart, form on the wrong side of the body.
At nine days old she had surgery to fit a pacemaker and make two repairs on her heart. Since then she has been in and out of hospital with infections and faces more surgery. She has been using services at Derian House since 2018 and doesn't get any other support from the NHS.
Mum Naomi, 37, said: “Before Covid we used to love coming to playgroup at Derian House – it’s fantastic and we can’t wait to come back.
“We also come in for family day care sessions, we use the cinema, hydrotherapy pool and we’ve been on a week’s break to one of Derian’s holiday lodges at Ribby Hall. I have used the counselling service too which is fantastic.”
The family self-referred after hearing about the pool facilities and Riziah is the first child to have swimming lessons at Derian House .
Naomi added: “Derian means everything to us. It gives me peace of mind and it’s a place we can take Riziah and always feel safe. We feel like part of a very special family there. The staff just make us feel normal.
“Last year Riziah battled sepsis and following our stay in hospital we had a period of isolation at home. Derian House was the first place Riziah visited. Knowing that she could enjoy herself whilst in a clean environment when her little immune system was so low gave me so much confidence to venture out of the house.
“I cherish the happy memories that Derian is helping us to create together as a family – that is a massive thing for us.”